Law, Bioethics, and Human Rights Part II PDF

LAW, BIOETHICS AND HUMAN RIGHTS Part II Prof. Ettore William Di Mauro  Ethical debate in bioethics The main question is: Anything that can be done, must be done anyway? There is substanti...

LAW, BIOETHICS AND HUMAN RIGHTS Part II Prof. Ettore William Di Mauro  Ethical debate in bioethics The main question is: Anything that can be done, must be done anyway? There is substantial theoretical agreement among scientist, moralists and jurists on the necessity of giving some sort of limitations to technological research and applications. What limitations? Contemporary philosophical thought is strongly marked by pluralism: moral positions differ as far as the choice of principles and values is concerned. The values and principles which are proposed in bioethics are extremely diversified. Law, bioethics and human rights 27/01/25 Pagina 2  The different Theories The most widespread theories 1.Liberal-libertarian Theory 2.Utilitarian Theory 3.Principlism Theory 4.Personalist Theory Law, bioethics and human rights 27/01/25 Pagina 3  Liberal-libertarian Theory It starts with the assumption of the non-existence and the impossibility to know a common objective truth Every effort to unification of the plurality of values is theoretically improbable and not desiderable, in so much that is is standardising and consequently also repressive with respect to the peculiarities. Every subjective ethical view must be accepted, tolerated and legitimated in its content, in an equivalent way to any other. The sharing of substantial morals remains possible within particular «moral communities» in which bonds among «moral friend» are established. Only with «moral communities» is it possible to agree unpon negotiation procedures in order to resolve bioethical controversies. The procedures consist in the stipulation of contracts or agreements between individuals who have differing substantial moral conceptions, based on «permission» and «informed consent» Law, bioethics and human rights 27/01/25 Pagina 4  In this perspective, everyone can keep their own particular ethical private conception. Libertarian bioethics considers that public debate is possible only if the origin of moral authority is sought not in substantial principles, but in the mere fact of agreeing between persons or moral communities. In this case the principles proposed in bioethics are: -The principle of autonomy or permission - it guarantees the condition of the possibility of morals, because it sets limits in the relationship between individuals and sets boundaries of every moral community. - It determines the moral subject of the individual that autonomously expresses consent. -The principle of beneficence - It determines the consents of moral life in the identification of a particular sense of what is good. - It encourages a benevolent attitude. Benelovence means a sympathetic attitude towards those who are not yet part of, or who are no longer part of, a moral community. Law, bioethics and human rights 27/01/25 Pagina 5 For this theory: Only the «moral agent» is a person in the real sense, because is able to draw up a contract, to express consent and permission, a self- conscious subject, capable of rationality and self-determination. The human beings that are not able to express cosent are people in «a broad sense». Criticalities The individuals who are not able to exercise freedom are not protected: - Or because they do not exercise it yet (i.e. embryos, foetuses, newborn babies, infants and minors); - Or Because they do not longer exercise it (i.e. the brain-damaged, the seriously disabled); - Those people who have never had and will never have freedom (i.e. the seriously congenitally handicapped with no hope of recovery ). Prenatal, neonatal, terminal human life having no contractual ability has a problematic statute. Law, bioethics and human rights 27/01/25 Pagina 6 For this theory: The individuals that are unable to give their own consent would become «objects» of the beneficence of the «moral agents», who could decide to protect them, but could also decide to sacrifice them in view of the realisation of other things, such as progress in biomedical scientific knowledge, economic interest or other. Law, bioethics and human rights 27/01/25 Pagina 7  Utilitirian Theory It justifies moral statements on the basis of the evaluation of the consequences which produce an action and not on the basis of the agent or act in itself. The action that produces the best consequences in terms of utility which coincides with welfare. Welfare is the best optimal balance of benefits over costs, of preferences/interests over damage. the centrality of utility comes from common moral experience Law, bioethics and human rights 27/01/25 Pagina 8  There are different theories of utilitarianism 1.The Theory of value it identifies the value with the pleasure produced by an action and the disvalue with the pain, measured according to the intensity, duration and certainty. 2.The Theory of preferences It identifies the value with the satisfaction and realisation of a desire, autonomously decided by rational agent. Utilitarian Theory gives priority to sensation compared to reason. In this sense, there are different levels of subjectivity on the basis of the different levels of conscience. -The minimal level is the possession of the ability to have pleasant and unpleasant sensations in the immediacy of the present (therefore possession of the central nervous system as a necessary neuropghysiological conditions ) -The intermediate level is the possession of the ability to carry out the complex elaboration of sensations, trough comparison and preferetail choice, in the present and the future. -The maximum level is the individual’s autonomous decision. Law, bioethics and human rights 27/01/25 Pagina 9 This theory reduces personal subjectivity to the presence of functions, defining the level of moral significance of the personal subjectivity according to the intensity and duration of the manifestation of the functions. The consequences (for example) -embryos, insofar as not being sentient, are not subjects or persons. -Animals, some of them, are subjects because they are able to feel pleasure and pain The life has value only when it has a certain level of «quality of life», measured in terms of welfare. A life in which suffering prevails is considered «not worth living». The right not to suffer becomes a «duty» to suppress suffering life». Law, bioethics and human rights 27/01/25 Pagina 10  Criticalities The reduction of the evaluation of actions only on the basis of the consequences or effects don’t explain the moral significance of the intentions of the act. Sometimes the subject makes choices that are not based on the calculation of the usefulness, but on moral sentiment or one’s own projects in life, because he may make choices that are in contrast with interests and subjective preferences out of a mere sense of duty. For example, a pain thats seems to be unbearable for someone can be for another person or for others not only bearable but even a reason to live. A disease can encourage you to live, it depends on the person. Law, bioethics and human rights 27/01/25 Pagina 11  Principlism Theory This theory considers possible to elaborate a bioethics at the level of principles. The principles have the function of elaborating an interpretative scheme of reference for the purposes of analysing concrete bioethical issues. -The principle of autonomy defines the freedom of the individual understood as non- interference and self-determinarion. -The principle of beneficence refers to the choice of the action that produces the best positive balance between benefits and damages. -The principle of non-maleficence derives from do not cause intetional damage. -The principle of justice is base on the criterion of distributive equity. These four principles aim to providing a strategy for a biotheics decision making process and constitute the basis of mediation whereby to stipulate pragmatic agreements on problems. Law, bioethics and human rights 27/01/25 Pagina 12  Criticalities - Principles risk becoming mere nominal empty references, that can be filled with any content according to different ethical theories and different actual situations. - The lack of a criterion for to the definition of the priority of principles means that each principle tends to become the privileged instrument of different theories. - There is the risk of falling into a situationist relativism or into a moral eclecticism. - This theory is criticised for the abstractness and rigidity of the interpretative de-personalised scheme that it proposes. Law, bioethics and human rights 27/01/25 Pagina 13  Personalist Theory Personalism justifies the intrinsic dignity of the person recognised in every human being, irrespective of the phase of physical-psychic development (beginning or end of life), of the condition of existence (health or illness) or of the properties that they possess or the abilities that they are able to show (sensitivity, awareness, rationality). A person is considered a concrete individual biologically incarnated in a body, which has its own ontological nature, and which manifests itself in abilities and behaviour. Either one is a person or not a person. Law, bioethics and human rights 27/01/25 Pagina 14  The consequences are: -The embryo, foetus, infant are «already» people, inasmuch that, even though all the properties have not yet been manifested at their highest level in the biological bosy being formed, the conditions constituting the necessary support exist for the continuous and progressive dynamic process, which will make the realisation of such features possible. -The brain-damaged, the person in coma are «still» people, because even though they are in existential conditions that do not permit the manifestation of certain abilities or behaviour, the absence of functions does not modify their ontological nature. The human body and the person are closely and inseparably interconnected. Law, bioethics and human rights 27/01/25 Pagina 15 The mistake of the other theories, which have separeted person from human being, consists in not acknowledging that the presence of a function or the presence of the conditions for its expression presupposes the existence of a subject. It is possible existence of the subject that makes the exercise of certain functions, not the exercise of the functions that constitutes the existence of the subject. Sensitive, rational, behaviours do not exist, but subjects incarnated in a body that feels, reasons and desires exist. Abstract qualities don’t exist. Only the actual determinations of a specific incarnated body exist, identifiable in the human person. Law, bioethics and human rights 27/01/25 Pagina 16 The personalist theory has offered justification for respect of human life. If the essence of man is the tendency towards the full realisation of himself, there follows a duty to respect life in all its manifestations so that it may come to its natural end. The principles are: -The defence of life, its intangibility and the impossibility of disposing of it; -The therapeutic principle according to which any intervention on life is justifiable only if it has the aim of curing the subject in question; -The principle of freedom and responsability where freedom recognises as an objective limit respect for others’ life; -The principle of sociality or the reaching of the common good by means of the good of the single. The main objection to this theory iss the identification of personalism with the religious perspective fo «sacredness of life», whch in the name of the absolute value of life restricts individual autonomy and social usefulness. Law, bioethics and human rights 27/01/25 Pagina 17  What is a person? Who is a person? While everyone would agree on considering a person as being worthy of respect and protection to a certain extent, not everyone agrees on the theoretical manner of understanding personality and on the empirical application of the concept. Two major opposing trends 1.The first argues for a separation of the concept of person from that of human being. 2.The second upholds an intrinsic identity between person and human being. Law, bioethics and human rights 27/01/25 Pagina 18 Not all human beings are persons, not all persons are human According to this viewpoint, The genetically and biologically human and individual being is not a person from the moment of fertilization but «becomes» such at a later stage of development and the death of a person is not marked by an irreversible cessation of all brain functions but may «end» before. The value of human life is not recognised in itself, but acknowledged only under some conditions or under the factual verification of certain conditions. Law, bioethics and human rights 27/01/25 Pagina 19 The functionalist conception restricts personal subjectivity to the presence of functions, thereby defining the level of moral sgnificance of personal subjectivity according to the degree and duration of manifestation of functions, regardless of qualitative considerations. Whoever is endowed with a higher level of sensitivity and consciousness (for utilitarians) and rationality and willingness (for libertarians) has more value, in spite of their nature. Human embryos and foetus are not subjects or persons, insofar as they are not sentient beings. Animals are sbjects as they able to feel pleasure and pain. The right not to suffer and the right to life are not regarded as equally important. The value of life of sentient subjects is subordinately attributable to pleasure/pain. Recognising the right not to suffer unnecessarily also means acknowledging an obligation to take away life when the suffering is too great in the present and predictably in the future and once it brings too much pain to others in the present and the future. Law, bioethics and human rights 27/01/25 Pagina 20 In the libertarian perspective, the beginning of personality may be identified at the moment of formation of cerebral cortex, considered to be essential for the exercise of rationality. In the utilitarian perspective, at the maximal level, a living being is a person when it acquires self-consciousness, intellectual activity, freedom, moral sense. In others terms, a person is a kind of entity having the moral right to make one’s own life choices, to live life without interference from others. The new emerging technologies open new scenarios offering new, transforming and artificializing the condition of techno-humanity. Law, bioethics and human rights 27/01/25 Pagina 21  All human beings are persons There are two main arguments: -The biological argument of the continuity. It is grounded in the observation that from the beginning of life, the human organism develops in a progressive and complex way,. i.e. the fact that the embryo is quantitatively imperceptible and that it does not yet fulfil certain functions doesn’t alter its status. -The ontological argument of the substantiality of the person. It claims that functions, properties and acts of the individual don’t exist in themselves, but only as functions and activities «of» a substantial human individual. Functions are «of» a person, they are not «the» person. It follows that zygotes, embryos, foetuses, new borns or minor are «already» persons. Similarly, the moribund, the disable person, people in comas, are «still» persons. This philosophical justification of the concept of person could be linked to the doctrine of human rights, which recognizes that every human being, regardless of their stage of devolpment or existential condition, has the dignity and rights of a human person. Law, bioethics and human rights 27/01/25 Pagina 22  What is biolaw? Biolaw is the inevitable result of bioethics. This is mainly due to the ever growing nedd in present day society for juridical regulations on biomedical activity, resulting from scientific and technological progress. The specificity of biolaw is to be found in the research oriented towards the drawing up of rules to discipline human behaviour at a social level, in the context of progress in scientific knowledge and technological possibilities in biology and medicine. Biolaw confines itself to prescribing behaviour in a binding way so as to guartee social life. Reasons for delay in biolaw: -The rapidity and dynamism of the biomedical technical-scientific progress -The slowness of the law besides the rigidity of the rule making procedures. -The prudence, in the fear that certain techno-scientific intervention on life may cause unforeseeable and irreversible effects. The different speed of techno-science compared to biolaw is structural and often results in the difficulty of the law in intervening in bioethical iusses, increasing the risk of obsolescence, but also the oppoiste risk if hurried interventionism. Law, bioethics and human rights 27/01/25 Pagina 23  Models of biolaw - The libertarian model. In the name of the affirmation of individual freedom, considers the absence of law preferable in bioethcis, because is perceived as an tool of oppression and unduly interference with subjective self-determination. Without law means the legalization of the praxis. What libertarians need is to a guarantee of free choice concerning life and death, health and sickness. Each individual, in this perspective, should act according to his/her «private» moral conscience, without any external ruling, above all in the form fo coercive imposition. There is a preference only for regulations of deontological codes, or the opiniones of ethics committees. - The liberal model. The intervention of law is useful to guaratee freedom, understood as individual self-determination. According to this theory, moral rights pertain to the sphere of autonomy of the bioethical choices compared to which the law should not interfere. Biolaw sholud protect the external and formal conditions allowing freedom to be concretely manifested and should abolish the impediments, ensuring the means for translating intentions into behaviour. Biolaw, in this view, accepts ethical pluralism, seeking to elaborate «neutral» rules, withput taking sides in favour or against any moral perspective, so that each individual person is free his/her individual option. Law, bioethics and human rights 27/01/25 Pagina 24 - The utiliatarian model. The aim of this model is to elaborate laws that guarantee the best pragmatic result possible in relation to social efficacy and productivity, increasing the quality of life and well-being and decreasing suffering. Utilities in biolaw coincides with welfare. Criticalities - Only free individuals or individuals who benefit from certain level of quality of life may claim rights. In other words, Healthy adults capable of understanding, deciding and taking action. - Other individuals are unable to claim their rights e and tacitly excluded from legal recognition (i.e. embryos, foetus, infants, terminally ill patient), becoming vulnerable subjects. Law, bioethics and human rights 27/01/25 Pagina 25 - The personalist model. In biolaw, it is the one which puts at the centre of ethics the intrinsic human dignity. The law is considered in itself as an tool for the defence of the objective dignity of every human being, considered as person. Every human being, either at the beginning or at the end of life, healthy or illness, able or disabled, minor or old is a person and should be treated as such. In this perspective, the law cannot become a mere tool of the individual will or the utilitarian convenience, and cannot be limited to the recording of social practices and individual claims. In this sense Biolaw is based on the principles of equality and human dignity. Every human being must be treated as a «subject» and not «object», having an intrinsic dignity. Dignity is a natural fact to be recognised and not a qualification to be given or awarded. The dignity of the human being as a right means the safeguard of physical integrity, prohibiting any form of suppression. Law, bioethics and human rights 27/01/25 Pagina 26  International Committees - UNESCO - The Union of several African countries (COPAB); - The Asian Bioethcis Association; - Regional Organizations od American States; - European Group on Ethics in Science and New Technologies at the European Commission. - Court of Human Right and Court of Justice of the European Union. These entities have contributed to create some shared principles in the world: 1. The primacy of the human being and his dignity; 2. Beneficence and non-maleficence; 3. The protection of freedom; 4. Justice; 5. Precaution, caution and prudence Law, bioethics and human rights 27/01/25 Pagina 27  Biolaw in the international context The awareness of harmonization of laws at the international level is gradually developing. The need for internationalization comes from the emergence of structurally trannational problems, as they are not confined within a region or a nation (i.e. pandemics, environmental iusses). Our world and our societies become increasingly interconnected and threats to global public health increase and continue to emerge. Law, bioethics and human rights 27/01/25 Pagina 28  The new sources of international biolaw - Codes of practices (i.e. professional codes of ethics as sources of soft law, as the practice of medicine). - Human rights framework (i.e. documents and Declarations) 1. Universal Declaration of Human Rights (art. 1) (UN) 1948; 2. Universal Declaration on the Human Genome and Human Rights (artt. 1 e 10) (UNESCO) 1997; 3. International Declaration on Human Genetic Data (art. 1) (UNESCO) 2003; 4. Universal Declaration on Bioethics and Human Rights (art. 3) (UNESCO) 2005. The last Declaration is particuraly important because it sets the minimum principles agreed and considered universally essential for bioethics, biolaw and biopolitics. The principles set out, express the recognition of the duty to respect human dignity and human rights. These documents are soft laws as a non-binding tool. To become binding, State ratification is required. Charter of Fundamental Rights of the European Union These are binding act. European Convention on Human Rights Law, bioethics and human rights 27/01/25 Pagina 29